Latest taper

[Leepeelee]

Hi ,

I have found the preds tapering process has been quite difficult, mainly massive withdrawal pains (I think), all of the way down from 20mg to 10mg each time was a struggle.

A month ago I went down from 11 - 10mg almost immediately the awful pains came back and stayed for about a week.

Since then I've had a pretty good month so decided to have a go at tapering again, so, 48hours ago I dropped from 10 down to 9mg . Bazzarely, this time it has been a lot easier but not perfect, 48hours in and so far I am only experiencing some mild pains, I'm still able to lift my arms in the air (usually unable to move my arms on previous tapers)! I was expecting this one to be more of a struggle than the last as I know that once on a dose of 10mg or lower, tapering can be more sensitive.

Do you think this is a good sign? Maybe the PMR is on it way out? (Wishful)

I do feel fairly foggy still but I guess this is probably the steroids rather than the PMR?

[SheffieldJane]

Oh I hope so Leepeelee. It does sound positive. Fingers crossed for you.

[DorsetLady PMRGCAuk volunteer]

Maybe a tad hopeful, you’ve not had Pred very long...perhaps you should think more along the lines of PMR being controlled.

Slow tapers, like the one attached, although there are others available we’re designed to stop the “withdrawal” effect you mention.

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

"A month ago I went down from 11 - 10mg almost immediately the awful pains came back and stayed for about a week"

That is absolutely typical of steroid withdrawal rheumatism - your body's reaction to the reduction in the amount of pred it is used to and which fades as you get more used to the lower dose. That is one of the reasons we go on about the tapering plans which are all listed here

healthunlocked.com/pmrgcauk...

- the smaller the step, the less likely it is to happen and be confused with a flare tempting both doctor and patient to return to a higher dose.

The other reason it is more difficult below 10mg is that you are getting ever closer to the dose you are looking for: the lowest dose that manages the symptoms as well as the starting dose did.

[Hidden]

We would never talk about it being "gone" or even in remission at 9/10mg. Just enjoy it! Some tapers went better than others for me. I remember crying with the withdrawal pain in my right shoulder for 3 days for 15/14 14/13 13/12. Then 11mg seemed ok .....10mg pain started generally after about 8 days..9mg. ...carried reducing on Drs orders....8mg ESR & CRP almost twice what they were at start and more severe pain MD fatigue. Since that 4 years ago I learned not to think about remission at all. Though it's hard not to when you have some good days. Start year 5 since dx June 15 (sisters birthday otherwise I wouldn't have the foggiest!!)

[Leepeelee in reply to Hidden]

Hi Hidden

Thanks. So after 5 years, what dose are you on now if you don't mind me asking?

[PMRpro Ambassador in reply to Leepeelee]

When a name shows as Hidden it usually means the poster has left the forum.

[Leepeelee in reply to PMRpro]

Oh 😂, thanks for letting me know!

My last post, I was feeling quite confident that my PMR may have gone into remission, I had tapered from 10mg down to 9mg and after 2 days, unlike all previous tapers I had not experienced any return of symptoms or withdrawals. How wrong was I, on day 3, I had massive pains in my right shoulder and upper arm, pains across my groin and upper thighs. At first I thought that this was the beginning of a PMR flare but I am now on day 7 since the taper and I feel a whole lot better, so it looks like the PMR is still there but at least I seem to have successfully tapered down from 10 - 9.

I am now going to stay at 9 for a month and give it another go then.

[PMRpro Ambassador in reply to Leepeelee]

You will know it has gone when you get to 0 pred and there is no return of symptoms - then and not before I'm afraid. And even then it can be sneaky and poke its head round the corner after a few months!

It may well be a bit less active - and it is unusual for steroid withdrawal to take 3 days though I know a few for whom it is like that. But it is sounding better

[Leepeelee]

Do you know what the average lowest dose with managed symptoms is? Or is it so variable that there is no average? Is it different for men or dependent on the persons weight? I am a male, I weigh 13stone

Random questions I know but just wondered if it made a difference?

[PMRpro Ambassador in reply to Leepeelee]

Everyone is different - and it even varies over the course of the illness. I know of people who struggle to get below 10mg but are well managed at the dose they are at and I know people who do well at 1mg but if the stop the symptoms come back within a few months.

An Italian study found that 75% of patients responded adequately within a month to a starting dose of 12.5mg, the best results were seen in small women, they were less good for larger males. But I know men who had a good result in a few days to 15mg and women who needed 20 or 25mg for a few weeks to get the symptoms under control. There are so many variables it is impossible to say what any particular person may need and that is partly why they start at a higher dose than they expect you to need and then reduce it in a process called titration to find the lowest dose that manages the symptoms as well as the starting dose did.